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Experiences with
Urso
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How often do people get a scan?
I am delighted that
urso
appears to be working but I was under the impression that we may still progress even with normal bloods. What’s everyone else’s experience?
I am delighted that
urso
appears to be working but I was under the impression that we may still progress even with normal bloods. What’s everyone else’s experience?
Angel_b
in
PBC Foundation
6 years ago
Hello
I’m not trying to be negative but I’m still new to this as I start
Urso
in a couple days and I’m waiting to find out if I have AIH as well as PBC...doctors are ruling it out by blood tests results ...Just been hearing a lot of stories about life altering PBC ..that it has been difficult for people to
I’m not trying to be negative but I’m still new to this as I start
Urso
in a couple days and I’m waiting to find out if I have AIH as well as PBC...doctors are ruling it out by blood tests results ...Just been hearing a lot of stories about life altering PBC ..that it has been difficult for people to
Irisw
in
PBC Foundation
6 years ago
Tattoo and pbc
Hi everyone, Can anyone tell weather permanent body tattoo cause pbc and should we take vitamin k and D injections life long or as long as we are in
Urso
.
Hi everyone, Can anyone tell weather permanent body tattoo cause pbc and should we take vitamin k and D injections life long or as long as we are in
Urso
.
Elfajasthi
in
PBC Foundation
6 years ago
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OCALIVA /Fibroscan Results
But I do wish I could have stayed on
Urso
. My personal feeling is OCA has not slowed progression.
But I do wish I could have stayed on
Urso
. My personal feeling is OCA has not slowed progression.
gwillistexas
in
PBC Foundation
6 years ago
PBC & Scleroderma
I’ve been diagnosed with PBC about 28 yrs ago , I’m now 70 , been on
urso
from day one 2 cap / 250 mg and now I’m on 3 caps .
I’ve been diagnosed with PBC about 28 yrs ago , I’m now 70 , been on
urso
from day one 2 cap / 250 mg and now I’m on 3 caps .
Arlie
in
PBC Foundation
6 years ago
Urso and itching
Was anyone’s itching still bad even after taking
Urso
? My doctor thinks because I’m on
Urso
and my numbers are going down I should not be itching anymore. It is worse than ever but she won’t beleive me. Thanks
Was anyone’s itching still bad even after taking
Urso
? My doctor thinks because I’m on
Urso
and my numbers are going down I should not be itching anymore. It is worse than ever but she won’t beleive me. Thanks
Rottiemommy
in
PBC Foundation
6 years ago
Emigrating with PBC?
Does anyone have any experience of moving abroad and obtaining a new
urso
prescription and monitoring in their new country? I have no particular country in mind, I’ve just always thought about emigrating but then that idea went on hold when I was diagnosed with pbc several years ago.
Does anyone have any experience of moving abroad and obtaining a new
urso
prescription and monitoring in their new country? I have no particular country in mind, I’ve just always thought about emigrating but then that idea went on hold when I was diagnosed with pbc several years ago.
Aussie05
in
PBC Foundation
6 years ago
Crawling feeling on right side of my head
I am on
Urso
and OCaliva. My itch and fatigue are in control but Since last year I got this creepy thing. Has anyone experienced this?
I am on
Urso
and OCaliva. My itch and fatigue are in control but Since last year I got this creepy thing. Has anyone experienced this?
Mg40
in
PBC Foundation
6 years ago
Any connection between dairy and itching?
Happy Friday everyone - PS i’ve Been on
Urso
since 1/17 and ocaliva since 10/17.
Happy Friday everyone - PS i’ve Been on
Urso
since 1/17 and ocaliva since 10/17.
Ottley3
in
PBC Foundation
6 years ago
Elevation of liver enzymes in Alagilles
Can it happen because we don’t give her
urso
anymore ? Would love to hear your stories. Thank you very much Dina
Can it happen because we don’t give her
urso
anymore ? Would love to hear your stories. Thank you very much Dina
Dina1986
in
Children's Liver Disease Foundation
6 years ago
Trying to loose weight
On
Urso
for PBC which is know to make you put on weight. Trying to find the right calories to eat to loose the weight. Have a BMI of 32 but can’t have anywhere near what they suggested which is 1450 and 1876 calories. Any suggestions.
On
Urso
for PBC which is know to make you put on weight. Trying to find the right calories to eat to loose the weight. Have a BMI of 32 but can’t have anywhere near what they suggested which is 1450 and 1876 calories. Any suggestions.
MrsPearson
in
Healthy Eating
6 years ago
Blood Donation
Hello, does anyone know if you can donate blood if you have PBC and are taking
Urso
? It’s not on the list of conditions / medications listed on the NHS site. I have quite a rare blood group, and apparently stocks are low in London so would like to donate if I can.
Hello, does anyone know if you can donate blood if you have PBC and are taking
Urso
? It’s not on the list of conditions / medications listed on the NHS site. I have quite a rare blood group, and apparently stocks are low in London so would like to donate if I can.
Suzielbeau
in
PBC Foundation
6 years ago
PBC and Itch
If you believe that your itch is caused by PBC or taking
Urso
, can you describe, what sort of itch is it? I'm experiencing itching and burning around my neck. I can clearly see red marks on my neck, where it itches. It looks like a release of histamine under the skin.
If you believe that your itch is caused by PBC or taking
Urso
, can you describe, what sort of itch is it? I'm experiencing itching and burning around my neck. I can clearly see red marks on my neck, where it itches. It looks like a release of histamine under the skin.
iagra
in
PBC Foundation
6 years ago
positive AMA and ANA for 4 years normal Lifts what to do?
AMA since 2014, picked up by a random test, since them i have been doing regular screening all my Lifts is in the normal range , never elevated, GGT normal, i have been tested for all the autoimmune diseases all negative, my gastro is convinced I have PBC, but against biopsy, he didnt not put me on
Urso
AMA since 2014, picked up by a random test, since them i have been doing regular screening all my Lifts is in the normal range , never elevated, GGT normal, i have been tested for all the autoimmune diseases all negative, my gastro is convinced I have PBC, but against biopsy, he didnt not put me on
Urso
Tatianau
in
PBC Foundation
6 years ago
Ocaliva, dosage, elevated cholesterol
Hi, diagnosed with pbc 3/17, started on
urso
4/17, improvement flattened 9/17, started ocaliva 5mg 11/17.
Hi, diagnosed with pbc 3/17, started on
urso
4/17, improvement flattened 9/17, started ocaliva 5mg 11/17.
Ottley3
in
PBC Foundation
6 years ago
Non -responder to ursodeoxycholic acid
Hi everyone So I saw my consultant on 18th June and he told me I’m not responding to
urso
!!!
Hi everyone So I saw my consultant on 18th June and he told me I’m not responding to
urso
!!!
Rozm2004
in
PBC Foundation
6 years ago
Vitamin D3 and Urso
Hi All, is it ok to take vitamin D3 and one of the 3
Urso
capsules at the same time with food? I take synthroid on an empty stomach when I wake up wait an hour have coffee and breakfast and this would be the time I would like to take these two meds. What say you? Ellyne
Hi All, is it ok to take vitamin D3 and one of the 3
Urso
capsules at the same time with food? I take synthroid on an empty stomach when I wake up wait an hour have coffee and breakfast and this would be the time I would like to take these two meds. What say you? Ellyne
Ellyne
in
PBC Foundation
6 years ago
Update:
Well, the
Urso
hasn’t worked like before, so my doctor has added Ocaliva to my list of medication. I started taking it once a day and had the itching side effect. So, instead of wanting to literally peel off the first layer of skin, I wanted to go deeper.
Well, the
Urso
hasn’t worked like before, so my doctor has added Ocaliva to my list of medication. I started taking it once a day and had the itching side effect. So, instead of wanting to literally peel off the first layer of skin, I wanted to go deeper.
Pamela372
in
PBCers Organization
6 years ago
Cost of Ocaliva in the US.
ALP was 755 and after a year on
Urso
only down to 540; been checked 3 times since diagnosis. Dr. is talking about adding Ocaliva. His words were "I don't want to bankrupt you but..."
ALP was 755 and after a year on
Urso
only down to 540; been checked 3 times since diagnosis. Dr. is talking about adding Ocaliva. His words were "I don't want to bankrupt you but..."
kp1234
in
PBC Foundation
6 years ago
Test Results
Urso
is working!!! Thanks for all the help and advise I received here. Ellyne
Urso
is working!!! Thanks for all the help and advise I received here. Ellyne
Ellyne
in
PBC Foundation
6 years ago
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